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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Sunday, March 24, 2013


Napa CA
 I’m in the midst of a 3½ week trip west to visit my children, Kai and Laurel in Seattle WA and Napa CA, respectively; I arrived in Napa last Thursday.  After my grandchildren returned home from school, I had a chance to talk with them about my Alzheimer’s.

When we were here at Christmas, I didn’t talk with them because I was under the mistaken impression that Laurel was going to wait until my symptoms were more noticeable before telling them about my diagnosis.  In fact, after our October conversation in which I revealed my diagnosis to Laurel, she began crying.  Eight-year-old Madeline noticed, so Laurel told her and 10-year-old Otto that their grandfather would have increasing trouble with memory.  Madeline’s two questions were, “Will grandpa forget how to eat?” and “Will he forget how to talk?” Laurel answered, “We’ll have to see.”

So I wanted to talk with them a little about it.  I asked them whether they knew about my “memory problem.”  They said that they did, but they didn’t follow up with any questions, so I didn’t press any further.  

The children haven’t related to me any differently.  When I mentioned something that happened to me in childhood, Madeline—always energetic and inquisitive—asked me why I could remember something from so far back.  I told her that most of my loss of memory was for things that happened recently, and she seemed satisfied with that.  When I’ve had to ask them about things I’ve forgotten, they’ve just answered simply without remarking.  I’ve found their matter-of-fact attitude quite refreshing.  I feel no sense of embarrassment: This is just one of those things that happen.

Madeline and I were playing Rummicub, a game with tiles and some of the features of the card game rummy; the purpose of the game is to play all your tiles, leaving none.  Otto, quieter and more cerebral, was hovering over each of us, “helping” by pointing out our best moves.  Toward the end of the game, I had three tiles left and could see only an obvious move that used one of my tiles.  But Otto quickly rearranged the tiles around to show me a move that used all my tiles.  Not only had I not seen the possibility of the move, but—even after he showed it to me and then returned the tiles in their previous position—I couldn’t duplicate what he’d just done.  I asked him to show me a second time, but I still couldn’t follow it.  Only after he’d showed me for the third time could I remember the steps long enough to duplicate it!  He seemed more pleased with himself than bothered by my disability.

True, the move was somewhat complicated, but seeing possibilities within chaos has always been my strength.  I wouldn’t have been able to imagine requiring three demonstrations to understand it. 

There were two different cognitive losses involved.  First, I couldn’t see the move ahead of time, which is, I think,  the loss the ability to hold several things in my mind at once and, therefore, not see the abstract implications of an action.  Second, the memory loss (that I’m getting used to): I wasn’t able to remember what Otto had just showed me.  Like my inability to remember what had just happened in a soccer game with Kai in Seattle (here), my immediate memory is very impaired.

Again, however, the kids seem to accept it as just the way it is.  They’ll say something like, “That’s your memory, right,” and life goes on. 

I’ve felt no embarrassment with them at all; in fact, we feel more bonded.


  1. This is a beautiful post, David. In a previous article I just read about your blog, you mentioned 'in the present, it's ok', but in the future, not so... that's what kids always remind us.. that gift of just staying in the present- we lose that as adults. I hope this blog reaches far- you are still teaching :)

    1. I was just reading Dostoevsky and he referred to dementia as the "second childhood," which was apparently a common term in certain cultures. Interesting.

  2. Thank you for writing this blog, Doc. I find great refuge in it-as my father suffered (and I am already impaired --in my early 50s).
    1.It is embarrassing and I usually just retreat -from asking a 2nd /3rd time. It is isolating & depressing.
    2. Also, women /medical staff blame menopause for a lot-I wonder if we tend to overlook early Alzheimer's by doing so? And conversely, if we over-sensitize to the possibility of Alzheimer's (perhaps, in my case)?
    3. Finally, Was it expensive to get definitive testing? You seem very confident of your Dx.
    4. I will read more of your blog- just started and am on an iPhone (limited reading).-Amy

    1. Amy:

      Thanks for writing, and I’m happy you’re interested in following the blog. I’m interested in your questions:

      1. "It is embarrassing and I usually just retreat -from asking a 2nd /3rd time. It is isolating & depressing."
      When I first found about my diagnosis last September, the thing I feared the most was the isolation, and I realized that one of the primary reasons for the isolation is the embarrassment (sometimes even shame) that is evoked. So nobody talks about it. So when you start to have the memory problems or find yourself unable to do the tasks that other people have depended upon you for, the only possibility seems to withdraw. Because being publicly open about things that people don’t ordinarily discuss is a strong part of my history, I made the decision right away to announce my diagnosis to everyone I knew (and quite a few people I didn’t know). And then I began referring to the symptoms—so far mostly memory loss—as they occurred, reminding people I had the disease. The response from my family and my (faith) community has been wonderful. I feel much less isolated than I did before my diagnosis. Things aren’t that bad for me, yet, so things may change, but being quite public and continuing to talk about it frequently has been very important for me.

      2. "Also, women /medical staff blame menopause for a lot-I wonder if we tend to overlook early Alzheimer's by doing so? And conversely, if we over-sensitize to the possibility of Alzheimer's (perhaps, in my case)?"
      I suspect you're exactly right about the two sides of the coin. On the one hand, most everyone (doctors included) want to avoid the diagnosis of Alzheimer's, so we try to find any other cause that will keep the true diagnosis at bay. On the other hand, it's very easy to take the symptoms of many other disease and too easily diagnose Alzheimer's. Since more definitive tests are expensive, we can go a long time without knowing for sure.
      3. "Finally, Was it expensive to get definitive testing? You seem very confident of your Dx."
      I haven’t yet had “definitive testing” (although I will get the two newest tests as part of a study I’ll soon be entering). My understanding of Alzheimer disease is that the only way to diagnose it definitively is by autopsy at death. The way it’s diagnosed in practice is that when “progressive cognitive impairment” is demonstrated (by straightforward cognitive testing) and the other causes of dementia have been ruled out, what’s left is Alzheimer’s. This is my current position; all the other diagnoses have been ruled out. I asked the neurologist point blank whether I had Alzheimer’s, and he was willing to have a direct conversation. He believes that I have Alzheimer’s; at another time he said that his “gut feeling” was that it was Alzheimer’s. As a physician myself, I know doctor-speak well enough to know that he’s as certain as one can be in medicine that it’s Alzheimer’s. There are two new tests, but they, too, have their uncertainties; both are only about 95% accurate. They are Positive Emission Tomography (PET), which is very expensive (I don’t know how expensive), and I chose not to have it. The other is a test of the spinal fluid (obtained by a spinal tap) that my doctor recommended against because there is a small risk of significant complications (like meningitis) and a positive test doesn’t change what we end up doing. The spinal fluid has about the same accuracy as the PET. Is it possible that I don’t have Alzheimer’s? Yes. But it’s highly unlikely. Given the many problems that skepticism about the diagnosis can bring, (the main one being you’re afraid to talk about I at all and feel even further isolated), I’m happy to believe I have it until proven otherwise. Given the fact that I'm now so public with the diagnosis, if I’m wrong, I'll be embarrassed. A few minutes after that, we can have a celebration.
      4. "I will read more of your blog"
      And I look forward to hearing more from you.


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